Hope and Uncertainty

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For many families the most daunting aspect of participating in a clinical trial is the uncertainty of the outcome. You must weigh the potential risks and benefits with very few answers readily available—because finding those answers is the goal of the trial. Your family may have to make substantial sacrifices, and there are risks and benefits associated with those too. Having made this decision, you have truly taken a leap of faith.

Clinical trial participation is a study in courage. You are participating in medical research, contributing to a greater good. Your participation helps advance science, build stronger communities, and impact the lives of children with serious illness. In other words, there are many ways that your participation, whatever the outcome of the research, can help. For all these reasons, it is important to approach, and live through, this process with hope.

Your Team:

Palliative Care Clinician

A specialist whose aim is to improve the quality of life of their patients over the course of their illness regardless of stage, by relieving pain and other symptoms of that illness.

Counselor

A professional who provides guidance and support.

Therapist

A professional who teaches lessons about emotions, thoughts, coping skills, facing fears, and more.

A parenting partner and your child’s clinicians will likely be your main support through this process. A palliative specialist can help you work through your feelings about and many of the logistics of the trial. A child-life specialist will be sensitive to the needs of siblings and can advise you on how to help them navigate changes in the family’s routine as well as their own emotions. A therapist or counselor can be a helpful sounding board as you experience life during and after the trial.

Clinical trial is also a study in vulnerability. You are in control of some things, while much of the trial process—because it is a rigorous process involving researchers, industry and regulators like the US Food and Drug Administration—is outside of your control. You have not determined who will be selected for the trial, or whether your child will receive the treatment or be in the control (placebo) group. You cannot predict whether there will be side effects from the treatment—or what those might be. The trial might take longer than expected or be discontinued for a reason also outside of your control. Members of your family may be affected by the process in unanticipated ways.

Your goals and expectations for the trial may be different from your hopes, which are just as important but may shift as the trial progresses and the scientists begin to understand how the treatment is working. You may be encouraged or disappointed. It is all part of the process.